Article: Dr. Peterson and ME/CFS Patients Meet with NIH Officials Prior to XMRV Works

You can view the page at http://www.forums.aboutmecfs.org/content.php?225-Dr-Peterson-and-ME-CFS-Patients-Meet-with-NIH-Officials-Prior-to-XMRV-Workshop

 

Terrific article, really powerful testimony. What amazing advocates.

 

What an amazing meeting Bob engineered. Bob has been focused on advocacy issues for quite some time and I know he's been racking his brain about what the next step is. I think he found a darn good one!

It again demonstrates how much things have changed in the past year - both on the federal end and on our end.

We do need to get away from this

[FONT="]Patients pointedly asked why has this illness been ignored for 2+ decades. When Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5000 scientific and medical studies on CFS already published.[/FONT]

There 5,000 papers published on CFS - that # even includes comments on papers. Very, very few of them focus on pathophysiology and biology; maybe 20 or so out of the hundreds of 'papers' on CFS that will be published this year will try to explain it in biological terms. There is VERY LITTLE study of the type we want taking place.

When Gottesman says this

it was due to a lack of concrete scientific, clinical and medical findings and published papers,

The response, I think, should be why is so little study being done on 1,000,000 sick people that cause the economy 20 billions a year in economic losses. Why is CFS spending at the NIH nearly dead last?

We, as a community need to keep on the ball and make sure that spending increases. Keep supporting advocacy efforts everywhere - when a group of ME/CFS patients gets a meeting with upper level NIH officials - we're starting to have a little bit of leverage; now is the time to step into the gap and attempt to move the issue!

 

Wow. Wow. I'm so impressed by, so proud of, and so grateful to these patients. It sounds like they did a good job of speaking for us, and I can only imagine what it will cost them in days of pain and exhaustion. Thank you, thank you, thank you. And another thanks to Dr Peterson, bless his heart, for standing with us once again.

It's encouraging that NIH representatives were willing to meet with patients. I'm not surprised to learn that they aren't aware of the history of the NIH involvement with ME/CFS (or lack thereof). Nor is it surprising that they aren't aware that Stephen Straus is not beloved by patients; they've probably only ever heard one side of that story. The NIH has a lot of history to overcome if they are to regain the trust of the patient community, but agreeing to meet with and listen to patients is a good first step.

Fixing the research funding process would be another good step. They need to quit hiding behind that worn-out cant about the lack of published research or about the lack of worthy research proposals. If for no other reason than because it's ridiculously circular logic: we can't fund research because there hasn't been enough research done. ???!!! Who is supposed to take the first step away from that little do-se-do?

Nevertheless, these people are not Stephen Straus or Anthony Fauci, and shouldn't be held responsible for the sins of others. They at least showed up at this meeting and I'm willing to give them the benefit of the doubt, even if I remain skeptical. So a thanks to the NIH officials, too, and my sincere apprepriation for the work of the NCI and the DTM on XMRV.

 

"Gottesman talked about how respected Dr. Alter is and how Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper carry a lot of weight."



Time to be both hopeful and active. Thank you Bob, Rivka, Dr. Peterson, and Cort.

 

I am so grateful to all of the individuals who are still fighting hard after many years of neglect, to put it politely. The hope that fuels their fire is so inspiring. Thank you for sharing this article and for your contributions to the meeting as well as your advocacy role in this war.

 

Thank you so very very much!

All of you, for your courage and, of all things, considering this disease, your clarity and persistence.

 

small correction re: stephen straus

This isn't about spelling really, but just so that the record is correct and people can research the correct person, the NIH researcher praised by Dr. Gottesman was the late Stephen Straus. Many search engines, such as PubMed, require a correct spelling in order to get results.

Sounds like an interesting meeting.

 

When Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5000 scientific and medical studies on CFS already published.

Ah, the well known CATCH-22. How are we to have decent science if no one funds any!?!

It is sad that they are still playing the excuses/political game. We are also lucky that Alter at his age can afford to wager all of his reputation for our cause.

 

I really like what ixchelcali says...Wow, wow!

Powerful, moving, and hopefully effective! Much gratitude to Robert, Rivka, Dr Peterson, other patients, and the NIH reps willing to listen.